It’s a Worrisome Life! Pharmaceutical Error and My Little Girl

In one of my favourite movies of all time, there is a subplot about a drunk and distraught druggist who makes a dangerous error (say that 10 times really fast). Fortunately, the young shop boy steps in and saves everyone from what would have been a fatal mistake. This morning we discovered that our baby girl is the victim of a pharmaceutical error herself, not fatal, but potentially serious.

A rather common side effect of Down Syndrome is hypothyroidism – low thyroid. We’ve spent the past several years working with her pediatrician to keep her level JUST RIGHT. Too high and she gets hyper, jittery and is unable to grow. Too low and she is lethargic, listless and also, unable to grow. Left untreated, low thyroid can cause brain damage.

A few months ago we realized that B needed another dosage adjustment. When I went to pick up the prescription I was surprised that it read “take 1/2 a pill daily”. I had hoped that a higher dose would mean an end to fiddling with that stupid pill cutter. I asked about it – gutsy for someone like me, who prefers not to make waves. “Isn’t she supposed to take the whole pill?” But I was assured that this was the correct dosage.

Apparently, I’m no George Bailey. I didn’t question it. I mean, I trust these people. They wear white coats for Pete’s sake; if that doesn’t spell “trustworthy,” I don’t know what does.

These past few months have been difficult in our house and at school. B has not been herself. She’s been irritable, needy and unfocused. I wondered if it was the adjustment to a new school year. We’ve had numerous discussions with the resource and classroom teachers, daily strategy sessions with the S.E.A.’s (teaching assistants), and notes flying back and forth about what to do. I wondered if she was coming down with something. We’ve taken many sick days, even antibiotics at the height of her distress (though her ear was only slightly red). I wondered if we are just crappy, crappy parents. There’s a distressed e-mail to a behavioural interventionist in the draft box of my computer.

Two days ago our family doctor phoned with the results of our much dreaded blood test. Apparently, her thyroid levels are way too low. I was confused; we had just upped the meds, so if anything it should be slightly high… Then I remembered my unease at the drugstore counter.

Sure enough, we’ve been giving her half the required dosage. And our pediatrician was pissed. It is behind the lack of energy and focus, the irritability, the general malaise.

At that moment I went through what psychologists may call “rapid cycling” – many strong emotions in quick order:

Guilt: I should have caught this. I did catch this. Why didn’t I catch this? Self recrimination is my super power.

Relief: It could have been the leukemia my darkest fears were whispering about. And it could have been much, much worse. If we didn’t catch it in time, it may have done permanent damage.

Fear: What if it did do permanent damage? Will this set her back? Will she ever recover? She was learning to read, doing so well and now she can barely stand to look at a book with me.

Anger: I have a powerful urge to find that careless pharmacist and squish him like the worthless insect he is.

More guilt: Because that’s just how I roll.

Gratitude: This explains so much and it’s an easy fix – just a pill a day for a happier child! How often can you say that?

I should have trusted my instincts. I have said it before, our instincts as parents are not infallible, but they are a God-given gift. It doesn’t matter what expertise and professional training the wildly intelligent people we deal with have, when push comes to shove, I am the expert on my child. If something feels wrong, it probably is. One of the best things I ever did was find a doctor who respects that.

All behaviour is communication. Whether it is saying “I’m tired,” “I’m hungry,” “I’m overwhelmed,” or “I have a deficit in an important growth hormone”, kids who act out are trying to tell us something. When I can’t figure out what the naughty behaviour means, I tend to chalk it up to random, unspecified grumpiness. That’s not without merit; Lord knows, I experience enough of it in my own life. But it is important to check for a physical reason and even visit my doctor when the behaviour seems uncharacteristic and out of control.

So that’s the moral of the story for me. It’s been a hard lesson. From now on I will listen to my gut and to listen to my child.

So here’s me, rehearsing my lines for the showdown at the pharmacy. No, I won’t be crushing anyone like a bug, but there will be a strongly worded complaint form filled out… um… if it’s not too much trouble. Stupid Canadian politeness! Stupid intimidating white coats!